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  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited October 2016 #42
    A brief note

    To say there is nothing is happening. Still getting the Nivo, and the radiation seems to have done little harm. I'm a tad chesty, so they have given me an inhaler and I feel like I'm functioning at about 85-90%, apparently a result of the amount of radiation they've given me. So nothing to complain about.

    Apparently they will do the scan in December. December? I want to know now!

    But I have to wait for the radiation to do what radiation does - which takes about three months apparently.

    And I have to be patient for Nivo to do what Nivo does alongside radiation.

    In the meantime I'm learning the mandolin, collecting historical sources for schools, walking the dog and eating Steak an Kidney Pie with kale (or chard).

    I want  to know if its working!

    All these different treatments have spoilt me!

    No probs, only optimism and hope.

  • todd121
    todd121 Member Posts: 1,448 Member
    edited October 2016 #43
    Footstomper said:

    A brief note

    To say there is nothing is happening. Still getting the Nivo, and the radiation seems to have done little harm. I'm a tad chesty, so they have given me an inhaler and I feel like I'm functioning at about 85-90%, apparently a result of the amount of radiation they've given me. So nothing to complain about.

    Apparently they will do the scan in December. December? I want to know now!

    But I have to wait for the radiation to do what radiation does - which takes about three months apparently.

    And I have to be patient for Nivo to do what Nivo does alongside radiation.

    In the meantime I'm learning the mandolin, collecting historical sources for schools, walking the dog and eating Steak an Kidney Pie with kale (or chard).

    I want  to know if its working!

    All these different treatments have spoilt me!

    No probs, only optimism and hope.

    I want to know too!

    Hope it's working and I definitely understand wanting the results. I get impatient waiting a week for my scan results. I don't know if I could stand 3 months.

    I tried to take up mandolin last year. I bought a cheap one. I think that was a mistake. It doesn't stay in tune even long enough for me to play a few minutes on it. How are you teaching yourself mandolin? Books? Youtube?

    Been thinking about banjo too...

    Thank you for your updates. I'm so glad to read them.

    Best,

    Todd

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #44
    Mandolin et al

    http://www.mandolessons.com

    You need a decent one because the pressure on the strings is enormous. It has the same tuning as the 4 string banjo and the violin family.

    The 5 string banjo is the real bluegrass/folk one and is surprisingly great at playing jewish folk songs (a brand new career on the Bar Mitzah circuit/) and christmas tunes.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #45
    At last!

    I'm getting a scan Friday next week. So we'll find out whether this abscopal effect thing works or not.

    Its so new, I'm really excited about the science. As is my oncologist and the radiation team.

    (Scanxiety will probably set in about tuesday!)

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited October 2016 #46
    How much

    I hope it works for you. Best of luck stomps!

  • rhominator
    rhominator Member Posts: 233 Member
    #47
    Rock on!

    Hey Stomps, thanks for the updates.  I can't wait to discuss this topic with my Oncologist.  Meanwhile, I hope you're building up callouses from your mandolin while I do the same with my 6-string.

  • gregslovey
    gregslovey Member Posts: 33
    #48
    good luck

    good luck with the scans!  I've been following along with all of you for quite some time before I joined.....I think you are all amazing, strong wonderful people.  I hope so bad this treatment did what you hope for.   

    My husband's first set of scans after starting Votrient are on November 2.....we are starting with scanxiety already. 

     

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited October 2016 #49
    There will be more treatment inline

    Good luck with the scan and treatment! Immunotherapy should be the path to a potential cure and it is still a new tech that we are developing. Just read from the news last week, there a new drug is out performing Sutent!

    <a href="http://www.curetoday.com/articles/cabometyx-bests-sutent-in-reducing-risk-of-progression-or-death-in-metastatic-kidney-cancer">Pfizer's Sutent comes up big in adjuvant trial, staving off cancer for 6 years-plus</a>

  • mrou50
    mrou50 Member Posts: 389 Member
    edited October 2016 #50
    FS

    FS I think good things are headed your way brother, hope all goes well.

    Mark

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #51
    Waiting to hear

    Waiting to hear the scan news, along with everyone's musical accomplishments. I'm focusing on the woodwind world of late, much to the detriment of the fingertip callouses on my left hand from playing guitar.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited October 2016 #52
    lobbyist0724 said:

    There will be more treatment inline

    Good luck with the scan and treatment! Immunotherapy should be the path to a potential cure and it is still a new tech that we are developing. Just read from the news last week, there a new drug is out performing Sutent!

    <a href="http://www.curetoday.com/articles/cabometyx-bests-sutent-in-reducing-risk-of-progression-or-death-in-metastatic-kidney-cancer">Pfizer's Sutent comes up big in adjuvant trial, staving off cancer for 6 years-plus</a>

    Thanks a lot

    Click on my name and you'll see I'm way beyond sutent. I notice from reading your profile youre grade 1. Congratulations, as far as getting cancer goes, you just drew the lucky card. They've caught it early, and having had it removed, you're probably in for a long life of stress free monitoring.

    Why dont you start your own thread and tell us about your experience and any questions you might have? Remember tho' we're patients not doctors. I guaruntee that on this board you'll find support all the way

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited October 2016 #53
    Footstomper said:

    Thanks a lot

    Click on my name and you'll see I'm way beyond sutent. I notice from reading your profile youre grade 1. Congratulations, as far as getting cancer goes, you just drew the lucky card. They've caught it early, and having had it removed, you're probably in for a long life of stress free monitoring.

    Why dont you start your own thread and tell us about your experience and any questions you might have? Remember tho' we're patients not doctors. I guaruntee that on this board you'll find support all the way

    Absolutely! I will share my

    Absolutely! I will share my story for sure.

    In fact, I was planning to share the news that the new drug cabometyx is out performing sutent. for the friends here that is not responding to suten, perhaps cabometyx can be a new drug to Try! 

    Take care!

    Carmen

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #54
    Thanks Carmen

    You'll find there are a few people already enjoying the benefits of cabo

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited October 2016 #55
    except

    that I am taking at least a week off for getting toxic. Doc said I'll restart at a lower dose.

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